>Did you have the full shoemaker labs done (HLA, C4a, MSH, VIP, MMP-9, etc)? What were your results on those (high or low)?

I had some of them done, a while after I moved out of the moldy house and then a year or so later. HLA DR: one mold susceptible gene, one "Low MSH" gene

Low MSH. Elevated MMP9. There were abnormalities on the other tests as well. But I didn't have VIP done (Shoemaker wasn't testing that at the time), and they messed up the C4a test both times.

>What were your cholesterol levels before you started cholestyramine?

I can't remember that. The only thing I remember ever being abnormal with regard to standard tests was that the triglycerides were somewhat high once. They never appeared to be problematic when on CSM.

>How are you feeling now? What is your activity level like?

Recovery from this disease is not the way that you'd think. It's not a straight line. For me, in the first stage, I felt quite a bit better but still sick in a variety of ways. Then I felt pretty normally energetic (including hiking, swimming, etc.), but brain function still quite impaired and reactivity really high. Then I managed to detox a lot of crap out of my brain, leading to my brain functioning returning to pre-illness, but my gut got messed up (including parasite issues) as a result of the toxin going through. Now I am working all day every day on things requiring cognitive ability, and my reactivity is not a big issue any more, but working on this parasite problem is physically tiring. Maybe eventually I will feel 100% better, with my gut totally fixed and no regular fatigue. But since those are my only real issues at this point.....I'll take it.

I was very very sick though. People who are not that sick would not have as hard of a time recovering.

>What has been the biggest help for you (besides removal from an infected place)?

Avoidance in general -- including avoidance of contaminated outside air, problematic buildings and contaminated possessions. Leaving the bad house was just a start.

Yes. At one point a couple of years ago, I had an eye infection and almost lost my eye. I think I would have, if I'd not had hyberbaric. Then when my eye got re-injured again, I tried hyberbaric again and found it equally helpful. I think it felt healing for my body in general. Maybe especially my brain. It is expensive and a good bit of trouble, but if I had access to it, I definitely would use it more. I was doing avoidance when using it though. I'm not convinced it would be a good idea for someone not doing avoidance and getting a lot of oxidative stress. It might actually even be counterproductive.

>Did you have the staph infection in the sinuses?

I didn't get that test done. But I wouldn't be surprised. I've not heard great results from people who have treated that infection though. I'm not a real big believer in treating the infections in this disease with drugs. The infections just come back. I more am a believer in focusing on removing toxins from the body and supporting the body with good nutrition, so that it can repair itself and take care of the infections on its own. But that unfortunately takes time.

@slayadragon In your experience has there been any extremely benificial binders for chelating the mold toxins out of the system besides choloestyramine? I have some mold build up from living in a very moldy house until recently moving and cannot take cholestral lowering drugs due to lyme complications.. I do know thay molybdenum is very effective at clearing out yeast neuro toxins so maybe it works the same way for mold... Been very helpful so fare.

Also whats Neuro therapy?

Thanks so much for the links and info it is very fascinating and so happy to hear about all your progress!

@slayadragon In your experience has there been any extremely benificial binders for chelating the mold toxins out of the system besides choloestyramine? I have some mold build up from living in a very moldy house until recently moving and cannot take cholestral lowering drugs due to lyme complications.. I do know thay molybdenum is very effective at clearing out yeast neuro toxins so maybe it works the same way for mold... Been very helpful so fare.

Also whats Neuro therapy?

Thanks so much for the links and info it is very fascinating and so happy to hear about all your progress!

It is about an entire family who got sick and their eventual healing through a very regimented diet that starved off the molds and their eventual return of good health.

Click to expand...

Cholestyramine is most commonly recommended, but it can be hard for people with ME/CFS to tolerate unless they are pursuing extreme avoidance. Shoemaker often recommends Welchol, but I am not sure that it is very good at removal of biotoxins. Another possibility is clay of various sorts (e.g. bentonite, green clay). Oatmeal (another cholesterol lowering substance) or arabinogalactan may help a bit.

A lof of other things that are used to remove toxins, such as seaweed or charcoal, seem to be the wrong charge to remove mold toxins. But it may be that removing any kind of toxin from the system will help health in general to improve.

Neural therapy is the insertion of small amounts of procaine into trigger points or scar tissue with a syringe. It seems to be helpful with lymphatic drainage.

I do know that book, by Kurt and Lee Ann Billings. They talk about interviews they did with various people and about some things they feel helped them get better.

Can you share a little about homeopathic detox; which remedies you used, and how you think they helped? Sorry if that's too much work.

I understand a liver flush or coffee enema detoxifies the liver and the GI very well, but I'm wondering if you've ever found straight liver tonics like milk thistle and such to be helpful on their own.

In early 2011, I had been doing avoidance and detoxing to the best of my ability for three years. I was doing well in a lot of ways (certainly compared to where I was when I was really sick), but my brain function was nothing like it was before I got sick (more core problems than just periodic brain fog) and my reactivity was really high.

I was getting Vitamin C IV's from a homeopathic doctor in Las Vegas, Terry Pfau. He encouraged me to talk to him about homeopathy, and so I agreed. He asked me a bunch of questions about my childhood and then suggested Natrum Sulphuricum as a constitutional remedy. He gave me a single dose of Nat Sulph, 1 M, 1/2 dram.

Interestingly, I had considered Natrum Sulphuricum as a possibly correct remedy for me more than a decade earlier but got no response. He said that Boiron (the brand that I had used) was not stable in high potencies of unusual remedies and that Hahneman (the brand he used) was more reliable.

Within half an hour of taking that remedy, I felt like I had a massive rush of toxin drainage from my brain. It was really overwhelming. I believe it was mold toxin, because I reacted to it in my stools and because my colonics therapist at the time (mostly recovered from fibromyalgia in a good house in Palm Springs) also reacted to it very strongly.

Just from this single dose, the toxins kept flowing out for six weeks. Finally I felt like it was having too much of a negative impact on my liver and so antidoted it with coffee. After a few months, I took another dose and the detox turned back on. Eventually I took a break and then did another round.

My brain function improved pretty quickly and dramatically subsequent to this experience. The mold reactivity did not go down all at once, but within a year of starting that remedy it had declined dramatically as well. I continue to doubt whether either of those things would have happened without that experience, since I know plenty of mold avoiders who never have their reactivity go down dramatically and who never entirely get their cognitive function back.

I see in the classical homeopathic literature that Nat Sulph seems to be a mold remedy, associated with damp buildings and with many symptoms typical of mold illness mentioned. Whether it would be helpful for other people, I don't know.

I would like to understand what happened. My feeling here is that the head injury that I got right when I was starting to get sick impeded toxin drainage from my head (it was right in the back where Chiari issues also manifest) and that the homeopathic remedy somehow fixed that. But it is very peculiar to think how that might have happened.

I have frequently made various kinds of liver-supporting teas, including with milk thistle, dandelion root, etc. Usually I add it to coffee enemas rather than drinking it. I don't really like the taste, and I think things may be absorbed better through the enemas than taking them orally. I think they likely have been helpful.